Life, Autism, Disability, and More

Typical

help wantedI really hate to post what I consider downer blogs, but sometimes that’s where I am.

A quick history: a little over a year ago, I quit my job to focus on writing and going to school. I had been teaching college English online, but I was discovering that my work weeks were lasting an easy 50 to 60 hours, and it was just too much.

The problem with that lack of job thing is that we’re now living on a single income, which can really be hard and can really suck sometimes. Every once in a while, I decide that I should go back out and get a job. But there’s only one problem: I really can’t.

All this really came to a head for me because a friend with three school-age children decided to apply for a job on a whim. She’d been looking for teaching work, but she found something else that sounded interesting. She got the job. She starts Monday.

Meanwhile, I can’t get a whim and decide to start a job. Because while Simon has school and even ESY (extended school year for those not in the know), he still has vacations and days off and half days and sick days. A regular job doesn’t work.

We can’t put Simon in any sort of daycare – he’s too old at 13. And he doesn’t deal well with sitters or anyone else taking care of him at the house. At this point, the only times we can go out are when he’s in school or when he’s asleep. And when he’s asleep, our babysitter has the easier job in the world because, well, he’s asleep.

We could probably find someone who could handle him and take care of him properly, but to do that, we’d probably be paying out at least as much as I could make at a job. When you factor in taxes and transportation, we may even lose money on the deal.

Honestly, sometimes I’m just not sure when – or if – I’ll ever be able to hold a “normal” job.

Which brings me back to the question of normal. Perhaps I should say typical?

Either way, it can make me feel frustrated and trapped, and jealous of people who don’t have the same restrictions. And then I feel guilty for feeling frustrated and trapped and jealous.

Now, I don’t want this to be a total downer blog. It’s not like I spend all my time thinking about this, and it’s not like I’m super down in the dumps about it. But it’s something that I think that parents of neurotypical children don’t have to think about it. They have their own worries, I admit, but different ones.

So what’s the whole point of this blog? I guess it probably comes back to my usual point: don’t judge. I need to stop judging myself for not being able to get a typical job. I need to stop judging other people who are able to get a typical job. I need to stop worrying about the future, stop judging the current and just go with the flow.

From zero to six in ten years…

Augen (eyes)

Language number five…

One of the first things the pediatrician pointed to was Simon’s lack of speech. He was a year old, and while he’d babble, for the most part he just pointed at things he wanted. He didn’t say Mama or Papa. She asked if we would mind if he got examined by Early Childhood Intervention when he was 15 months old if things hadn’t changed. We agreed.

He didn’t talk by the time he was 15 months old.

He also didn’t talk by the time he was two years old.

Eventually, through the use of videos, he learned American Sign Language (ASL).

Then he began speaking, also through the use of videos. His first word, which he said when he was almost three years old, was “bear,” and he said it after watching a Baby Bumblebee video.

For a long time, we worked with sign language and English. He slowly picked it up and began expanding what he said.

Years passed.

He taught himself to read.

He learned how to write.

Then, earlier this month, not long after he turned 13, he discovered the language options on those old Baby Bumblebee DVDs. He’d never stopped watching the videos. I guess he still liked the word repetition they feature.

We realized that he was watching the Spanish option, repeating all the words. We asked him to tell us things in Spanish, and he did. He knew dog was perro and cat was gato.

Next up was French. I guess he thought that he’d already mastered the Spanish parts of the DVD.

Of course, when we went out to lunch with a friend, I tried to get him to show off. I asked him how to say dog in French. He looked at me like I was an idiot and said, “poodle.”

After a lot of laughing, I asked him for it again and he said, “chien.” I asked him for it in Spanish, and he said, “perro.”

So, yeah, he took to those languages.

Then, not even a week ago, he began learning German. His favorite word was “augen” (eyes).

A few days ago, he swapped to the final language option: Japanese. (Dog is inu, by the way.)

If you’d asked me ten years ago what I thought Simon’s “special skill” would have been, I might have guessed his art work. He’s awesome when he draws. I never would have guessed that he’d be into languages. I’m not sure that he’ll stick with them, but he obviously has quite a talent there, and maybe this will be where he goes in life. It goes to show you that ten years can be quite a long time and quite a lot can change.

And then he surprises you sometimes…

returning library booksWe’ve had a rough week off school, but tried to make it as fun as possible: Chuck E Cheese, ‘Palm Beach’ (which is like a splash pad on crack), the library, shopping, and horseback riding. We didn’t stop. Even with the meltdowns and constant reminders that we would have ESY – Extended School Year for you newbies – we got through it all happy, for the most part.

This weekend went even better, probably because Simon knew that ESY was right around the corner. He even slowed down his constant asking for the circus, which I hope means he realizes that it will happen, but not until next month when they actually come to Houston.

But then, today, we decided to go to the library again.

We had started last week with the library, going on Monday, and, of course, he loved it as always. But I had taken out some DVDs, and while books have up to three weeks, the DVDs only get a one week rental period. Since I knew tomorrow would be crazy with the first day of ESY, I suggested we go today.

A good, solid plan, right?

So solid that when I asked Simon if he wanted to go, he said yes. He did his usual going out routine (bathroom and finding his flip flops), and then he came to meet up with us in the kitchen. Holding his library book from last week. He had found it and was ready to return it and swap it out for a new one.

We’ve never taught him to do that. We’ve never told him to do that. He just knew we were going to the library, and he put it together that he was done with the book, so he wanted to return it.

Totally cool.

I know that to some parents, that might be nothing. But for him to make the observation, then to go and to find the book and bring it along…that’s really something for him. It took forethought and planning. It took effort. It took being truly aware of what the library is, and what we do there.

I had actually wondered if he understood the concept of ‘borrowing’ books from the library. He knew that we took them out. And I’d take his books and put them in the stack of returned books, but he’d never done it before himself. And he’d never said anything or done anyway to make me aware that he knew it was going on.

A little victory maybe, but a super cool one, and one that convinces me that all our trips to the library are definitely worth it, and not just for the awesome selection of books and movies and music they have there. (Have I mentioned my library rocks? Because it does.)

Dear Neighbors, I apologize. Sort of.

backyardToday, Simon is 13.

Today, Simon is about five feet tall, a fact I can attest to because, if I’m barefoot and he’s wearing flip flops, he can look me directly in the eye.

Today, Simon went to his second to last day of the 6th grade, an “early release” day that meant he got home at little after 12:15 instead of 3:30.

Today, Simon had a few massive meltdowns.

Now, I kind of expected that last one. The end of the school year and days on different schedules always make things harder on Simon. But today, he got off the bus happy and told me it was “good.”

Whew.

Or not.

It didn’t last.

The first meltdown happened when he realized that while today was his birthday, and while he was having a Chuck E Cheese birthday party on Sunday, we were not actually going to Chuck E Cheese today.

I tried all my usual bag of tricks to calm him down. Nothing helped.

I thought about a quote that I’d seen on Facebook earlier – the question of whether or not this was a hill worth dying on. Was this really the battle I wanted to fight? Was it worth it?

Nope.

I was just going to go with it.

We went to see the rat. We even walked in while Chuck E Cheese was standing at the front, having just done his song and dance (literally), so Simon got to high five him.

Everything was right with the world again.

where is dad note
Until we got home, and it all went wrong.

If Simon had been thinking it was a normal day, then he’d been home long enough that Dad should have been home waiting for us by then. Of course, it was early release, so it wasn’t even close to time.

Thus begun the half hour of full-lunged screaming and crying. Right into my ears. Right in my face.

We went through the weighted blanket. Singing. Tickling. Writing out what was going on. All the usual fixes. None lasted longer than one or two minutes.

Until I asked if he wanted to go outside on the swings and wait for Dad there.

Winner!

Simon was semi-calmed down. Not super loud screaming anymore. But still lots of repetition. I’m not sure what the neighbors thought of my obvious inability to produce Dad on demand, but after a while, he enjoyed the swing set enough to calm down. Mostly.

And once Dad got home, things definitely calmed down.

Now, I’m not trying to make this sound like it was a horrible, no good, awful day.

birthday toys
Simon had a great time a Chuck E Cheese. He picked out Dora the Explorer cupcakes that he wanted to share with our friends’ kids. He opened presents, including a last-minute emergency gift (long story, possibly coming later) of a ukulele, two “magic pen” books, and two super soft, heavy stars that are meant as sensory toys. He loved the gifts, and laid on the floor with the stars on his back while he colored in one of the books. It was a good day, in the end, with just a rough patch in the afternoon.

But what a rough patch.

My head still hurts.

So maybe don’t think it was a bad day. But I do still have a headache from all the screaming, and I wouldn’t say no to a Starbucks card or two. :)

Baseball the right way

Local Challenger League teams - Simon's in the middle!

Local Challenger League teams – Simon’s in the middle!

This is Simon’s second season/second year with the Heroes here in League City. It’s part of the Challenger League, a special needs Little League baseball thingy.

Here’s why it’s awesome: it’s normally one of the most relaxed ways of playing games.

Simon’s game today was at 10 a.m. Which was only a slight problem because we were out at a late movie last night, and so we set the alarm to get up in time to make it to his game on time. But then one of us (ahem, Patrick) reset the alarm when it went off without realizing it, and so we slept a bit more than we meant to.

We woke up at 10 a.m.

Whoops.

But we got Simon ready – he was totally up for it because most of the season got cancelled because of all the rain we’ve been having lately. And we got there less than half an hour late.

The game was already underway, but they got Simon slipped into the batting line-up.

Because we were late, he only got to play one and a half innings (instead of two), but he was still happy enough.

The best part, though, wasn’t even his playing.

The best part was that, near the very end of the game, during Simon’s team last at-bat, the last chance to bat, one of the other team’s players decided that he did want to bat after all. Apparently he hadn’t wanted to go during his team’s turn, but he changed his mind.

So he came up and hit.

Because why not?

Everyone had a good game. Everyone had fun. And then there was ice cream afterwards.

Only one game left this season. Hoping the weather doesn’t knock it out of the park.

The Dreaded Last-Minute Schedule Change

Grilled cheesy goodness!

Grilled cheesy goodness!

It was a long holiday weekend – I spent it at Comicpalooza, and Patrick spent it at home with Simon. Overall, a fairly relaxed weekend for all involved, and I made it home early on Monday (just after lunch). Nice, easy afternoon…except when Simon decided that we should go out to Denny’s for dinner. We convinced him that we weren’t going, instead ran a quick errand to the store, an option that often works as his “reset” button when he gets stuck, and came back home.

All the while, Simon kept talking about school and gymnastics. School on Tuesday morning. Gymnastics after school. It was all set. It was all good.

Then I got an email around 11 a.m. Gymnastics was canceled this week. And it would be canceled next week. After that, the time would shift, but they would be pro-rating our tuition to make up for the two missed classes.

Oh. My. God.

A last minute schedule change.

You people out there who deal with kids on the spectrum, kids who know which day is which, kids who have *planned* their days. You know how I was feeling right about then.

Panic.

It’s never easy to re-direct Simon from one thing to another, especially when that first thing is totally ingrained into the schedule or his life. He expects his gymnastics to be there, and if they aren’t…well, we all hear about it.

It would be okay, though. My migraine seemed to be (mostly) gone, and so the plan would be to take him to the library – another favorite of his – and then, since he had been asking for Denny’s, we would go ahead and do that. It would be a totally reset. We hoped.

Except that, while I was out, drinking the coffee that was supposed to help make sure that my migraine was gone, gone gone, the migraine came back, back, back. First as an ocular migraine, which I realized when I stood up and noticed that the left side of the room had vanished, and then as a full-fledged, pounding through my left eye headache.

Whoops.

Luckily, Patrick could make it home early. He got Simon off the bus, convinced him of the wonder of the schedule change – “The library! What an awesome place! Let’s go there instead!” – and took him out while I laid in bed, trying to make my head stop pounding.

They got back a little earlier than I expected, and I was still trying to convince my head to stop hurting enough that I could actually eat without throwing up. Once it was close enough, we headed to Denny’s.

Reset complete.

Of course, today Simon has been bringing up gymnastics again, but I think I’ve convinced him that the break in the schedule will be like any other break we take from things, like when the school year ends or the horseback riding semester ends. Not much warning, but at least we’ve avoided Denny’s today, and hopefully we can keep avoiding it for a few more days…

Whoops – Judge not, lest ye…oh, screw it, just don’t judge.

So, of course, the post about not judging me wound up on the wrong blog.

Ummm.

Sorry.

Go here!

https://katsanger.wordpress.com/2015/05/22/judge-not-lest-yeoh-screw-it-just-dont-judge/


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